After spending the weekend at Camp John Mark, in which they held a weekend camp for children with the diagnosis of Spina Bifida and their families/siblings, I could not help leaving with some concerning questions.

Camp itself was great, but I had questions and concerns about my son’s care and education.

At camp, they hold a special time for mothers and fathers to gather and meet with one another. This time allows one another to ask questions, seek advice, find support and more.

I had spoken to several mothers on tips for potty training, cathing, self-cathing, and so much more! It felt like every time I asked a questions, I had two more to ask.

Although every child with spina bifida is unique as well as their care, some things we can unite on and provide one another with some helpful tips.

For instance, we do Cath Oliver every three hours, and while the timing may be different for each kid, I can find other mothers who also Cath their children and are able to talk with me about it.

One thing we have had trouble with, is finding a bowel program that works for Oliver, to be able to have bowel movements at specific periods of the day and not so much “accidents” whenever and wherever we may be.

We have brought it up at appointments before, and are usually just told that other kids who may be on more medication or programs are usually because they have more trouble going.

But at what point are we considered the same with those children, as “having trouble going” or just not adaptive to the simple prescriptions we have?

How long do our concerns to do something more than just the basic get swept under the rug, before finally they are finally listened to?

Another instance in which I felt like maybe there was more I could do for my son, was with education.

Oliver was seen by ECI (early childhood intervention) all the way up until he was three years old.

At this point, ECI drops off to transition the children into getting therapy and some time away to spend at the school. Like an early pre-k program, but for children with disabilities.

You are to be evaluated by the district in which they can determine how many hours they feel your child could spend at the school with other children.

Unfortunately I learned that my interview over the phone was probably not the best the school could have done for me, and being told that my son did not qualify for any time “because his only impairment was his physical disability”.

If it was not for these mothers giving me the push and information I had not known before, I would have still been the clueless accepting mother just wondering what more could I be doing for my disabled son.

It is finally time to take action!

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